Friday, May 30, 2014

Eric's Choice


Most know that my twenty-two year old son, Eric, is dying from hospital error due to his brain aneurysm. I feel a million different emotions raging inside of me. I’m going to attempt to share my inner most feelings with you, not for your sympathy, I don’t want that, but for those who have been or may be where I am, I want you to know I understand. For those that will never be in this position I want you to understand that this is not an easy road, nor does it grant easy choices.

I’ve learned a lot about myself and others through this process.

Yesterday, my forty-eight hours were up. I was supposed to make the decision to end Eric’s life after that time period. I’ve thought long and hard about making this decision. I have thought about it since May 7th when it first happened. I never let go of the fear of having to make that decision.

I told myself that I would donate every organ I could, because he was young and healthy and he could provide life to others, he could provide sight to the blind, and I liked knowing someone else could live and thrive because of Eric. I told myself that somehow it gave Eric’s life, and death, meaning.

I was promised by the leading neurologist that Eric wouldn’t live until May 22nd. I was told that his brain was going to explode through the stitches and it would bust out of the area that is missing skull. His intracranial pressures were through the roof and they couldn’t bring them down. With this thought in mind, I made myself believe that organ donation was a perfect route. He would die from brain death.

Eric did live and never broke through the stitches in his head, though his cranial pressure is still very high and he is somewhat disfigured from the swelling, he is still breathing above the vent.

I felt the pressure from the hospital growing. They wanted me to do comfort care. “Let him go with a dignified death.”

Those words rang over and over in my head. There was nothing dignified in what the hospital did to him and they are solely responsible for Eric’s current condition. They don’t even try to deny or hide that fact. Now, I should give him comfort care. I am expected to pull a ventilator on my child that is still breathing; as he breathes they administer more and more morphine until he goes into cardiac arrest. We lose his heart for donation because of the cardiac arrest that they cause, but they can still harvest the rest of his organs. “It’s the humane thing to do.”

I’ve heard all the comments that make me sound like a loving and selfless hero. Those kind words began to feel abrasive. It wasn’t and isn’t true. I am not a hero because I am willing to donate organs. I am not selfless because I’m willing to “part out” my son. Actually, the raw and bitter truth is probably the most selfish thing I’ve ever done in my life. I am not donating because I’m so good hearted I am sacrificing Eric’s organs to give life to the less fortunate. My truth is I am donating those organs, if I can, because I DON’T WANT ERIC TO DIE and if I can keep him, or pieces of him, alive in another host then he isn’t gone, he isn’t dead. So please, I’m no saint.

Yesterday I came to terms, being faced with ending his life. I thought out “dignified” death. This is what I believe:

Every life form, at the time of distinction does everything possible to maintain survival. Eric wouldn’t be any different.

In my mind, though I know he never wanted to live as a vegetable, he is locked in his failing body. He has had no choices. Fate made choices, doctor’s made choices, I made choices, but Eric’s voice is unable to be heard.

My choices remain: 1) Pull the ventilator and let him go into cardiac arrest eventually, after they drug him so he doesn’t feel the pain and torture of suffocation. With that, we lose the heart for donation, but all of his other organs can be donated. 2) We wait for the next stroke that will take out the brain stem so he will go brain dead and then we can “harvest” his heart along with his other organs. 3) Because his body is deteriorating, let him go into his own cardiac arrest and we lose all the organs and he is gone, no donations.

Because I have dealt with many, many hurtful and close deaths I have whispered “I love you, let go, be free” into many ears. I said those words with great love and acceptance of my personal loss, but it was never my son.

I have spent Eric’s twenty-two years, kissing booboos, scaring away monsters, and making things better. I can’t say the words “let go it’s okay to leave.” I can’t give my son the permission he may be waiting for because I see the scared little boy, the one waiting on me to make it better, to fix it, to fix him, and I know he will be so afraid if he knows I’m giving up on him. I wouldn’t. He knows that.  I can tell him I love him, but I can’t and won’t end his life with his last though of his mom being the one that ended his life. I believe he would be screaming, “No, mom, what are you doing, I said three months, please mom, don’t do this, why are you doing this to me.”

My opposition argues with me, they want the organ donation; they want a dignified death for Eric. They believe he would be screaming to put him out of his misery, but life, in its rawest forms fights to preserve itself and Eric wouldn’t be any different.

I have given the word “dignity” a lot of thought. Dignified death? Is death, brought on by man dignified? Is death, by the hand of family or medical personal dignified? What is dignified death?

Death is death. Just because we have the technology to end a life, do we have the right to do so? Do we have the right to put someone into eternal sleep because the costs have gotten too high or the family can’t handle any more traumas? Is that what we as a people have told ourselves; it’s humane, let them go with dignity because ending someone’s life is more convenient and cheaper than the alternative? I don’t think that is dignity.

Dignity to me is accepting fate with honor.

So, no matter how selfish I am in wanting Eric to live on, no matter how much he is costing me, my family, or the hospitals, I am granting Eric his own say. I am backing off. Eric is in control of his own death. I do not have the right to take his life, nor does anyone else. I do not have the right to farm out his organs. This one is Eric’s call.

I believe, no matter how bad I would wish for Eric to live on in others, that Eric will die as Eric chooses and through that death he is living out his fate. The death his fate chooses will tell me if I can donate organs. If he goes brain dead Eric is telling us to take what we need to save others. If he goes via cardiac arrest and we lose the ability to donate any organs, so be it, it is his way of saying: “I’m out and I’m taking me with me.”

I am backing off and allowing Eric to complete his life, his way, and to me that is dignity.

Thanks for listening,

Eric’s Mom.
https://www.crowdrise.com/helpushelperic/fundraiser/nicoleconsiglio
  

Tuesday, May 27, 2014

Eric Update


 

As many of you know, my son, Eric Cook, had a brain aneurysm on May 7. After the aneurysm, Eric showed great signs of improvement. He could move every limb, he cried as he squeezed his sister and a friend’s hand, in unison. He danced on command. We knew he was in there. We knew he was alive. He was so alive, the nurse showed tears and told us that he was moving on command so well she was having fun with it even when we weren’t in the room.

The aneurysm was coiled and he was in very critical condition with all odds against him, but daily I was told every day is progress. Every day he was alive was significant. He had a wonderful doctor from Detroit Medical Center, who I could trust. The Oakwood doctors, well, they are Oakwood doctors, and if you know Oakwood Hospital, enough said.

It was banged into our heads that Eric’s age was his number one issue against him, his brain didn’t have the room to swell, but if we could keep him alive through the critical moments, his age would be his biggest asset. Young brains can rewire themselves and do miracles with time. Time and time again I was told that you couldn’t give prognosis to the damage of a young brain.

In the beginning, we were told Eric had a stroke with right side damage. The stroke was a part of the aneurysm; it was due to the blood on the brain from the break.

The attitude from Oakwood Neurology was horrendous. They wore their God Complexes openly as if they earned their right to play the role. The mistakes seemed to manifest with poor quality health care and pompousness, but in the end, they continuously passed the buck, unable to take responsibility for their own actions, or inactions. The only person I could count on was our genius, the doctor that saved Eric’s life, but I can’t expose her at this time. She wasn’t an Oakwood staff doctor.

I watched as Eric in Neurology told our ICU nurse not to take intracranial pressure readings because he thought the transducer was plugged with clogged blood and didn’t want to change the tubing. He told her, at about 8 p.m. not to chart the pressures because Eric was going for angioplasty for vasospasm at 5a.m and “they could deal with it.” That one action gave birth to a stroke, still affecting only the right side, but it was a serious error typical of Oakwood.

It was because of this stroke that our little genius had him pulled from Oakwood. She tried to get him into DMC, but there weren’t any beds available. She assured me that Henry Ford was far more capable and she felt comfortable with it. I agreed.

Eric was doing wonderfully. He was opening his eyes. I didn’t see it, I wasn’t there during the neurologic tests, but the nurses were very happy about his stability. Still in critical condition, he was termed “very stable.” I was told that it was very early into Eric’s condition to be opening his eyes, especially after the latest stroke. I felt confident with the progress and believed they had a grip on Eric’s condition. He was progressing and that is the best we had for the situation. I liked very stable with opening his eyes.

Eric was still in vasospasm which is a collapsing of the vessels in the brain due to excess fluids and the blood that had settled from the bleed. He had already had one angioplasty, by the genius, and it went very well. At Henry Ford, his numbers were still “very stable, nowhere near what they were at Oakwood.” His intracranial pressures were between 8 and 10 which were very good.

I received a call at about 8 p.m. on May 16, asking permission to perform this very standard and simple procedure. I was reassured from of the information in the above paragraph. I felt confident as I was assured how incredibly stable Eric was and how simple the procedure was.

Time ticked and I felt it was taking too long. My daughter said it wasn’t much different than the first angioplasty. At 12:06 a.m. on May 17, six minutes into Eric’s 22nd birthday, the phone rang. The man could bearly speak. He was in tears. He was shaken. His first words were: “It’s bad, it’s very bad.” My heart dropped, but I had to keep my composure. I was expecting him to tell me they lost Eric on the table.

“The only thing good thing is he didn’t die on the table.” The man cried.

“What happened?”

“I blew the balloon up in his head. I did this. I am so sorry. He was doing so good. He was opening his eyes and everything. He was doing so good, I am so sorry.”

“Okay, stop, explain to me what happened.” I said, heart pounding and scared to death. I knew it was very bad news.

“I put in too much pressure and the balloon broke. It caused another bleed and another stroke, most of the damage that we can tell is still on the right, a little on the left, and he is still alive. I’m so sorry.”

“You know, six minutes ago it became Eric’s 22nd birthday.”


“Oh no, I’m so sorry.” The man was totally distraught.

“Okay, did you stop the bleed?”

“No, the bleed stopped on its own which is a good thing.”

“Okay. Stop.” His tears were making it harder for me. “Obviously you are very shaken and upset, but we can’t look backwards, we have to look forward. Just find a way to save my son.”

I had the gut feeling this was a student, resident, or someone new to the field. I was angry, but I knew in my heart this kid was totally shaken up and Eric had no other choice but to live out this guy’s mistake.

Eric remained on full code. The leading doctor said that he had been doing this for 15 or 16 years and had at least 1500 or 1600 of these cases. He said that Eric’s case had him perplexed and he was “nowhere near throwing in the towel.” This was on Sunday, May 18th. He told me he ordered an MRI for Monday morning, because he needed a full staph that wasn’t there on the weekends, because of Eric’s serious condition.

Eric was now in a coma, both pupils blown, but I was told they can come back.

On Monday, I received a call from the resident asking permission for a tube to be changed. I granted that permission. I asked about the MRI. She told me it was cancelled because his ICP was too high and he wasn’t stable enough to lay flat for the test. She then assured me that the goal has not changed. The goal was to keep his body stable. She said: “Though I can’t give you one bit of optimism, we keep them stable because sometimes in these cases we see a totally different scenario in three months.”

Within the next 60 minutes I received a call from a neurologist. Without any test ran, no MRI, no CAT, he tells me we need to discuss comfort care.

Out of nowhere.

I told him every what every other doctor said. He told me I talk to too many doctors. I asked to speak to the department head; he told me the department head only does sports medicine. I told him I wanted our doctor that had him transferred to review the records, he told me there were only 7 people in Michigan that was trained well enough to know what he did and she wasn’t one of them. I told him no tests had been taken and his response was: “Are you are happy with your son breathing and hiccupping once in a while?” The guy was cold, callus, and insensitive, but he was also going against every word from every doctor.

I told him I am not ready to make that decision without some test to verify what he was saying to me. He told me he understood I was under emotional distress and he could take it to court to get guardianship to make decisions for me.

I was flabbergasted. Without test to back his words I felt the need for Henry Ford to hurry and euthanize their big mistake. But, anyone that knows me knows, that isn’t how I roll. I am not going to intimidate or crumble. My son, my job, period.

I met with him last Wednesday. He told me Eric will be a vegetable.  I had two questions in my mind. 1) Is he brain dead, and 2) can he be an organ donor?”

No, he isn’t brain dead and yes he can be an organ donor.

He told me that the pressures in Eric’s brain had gone up to 60 and they were waiting for the right side of his head to explode outward and break through the stitches. He expected this to happen before days end and then Eric would be brain dead. He told me there was no way that Eric’s brain would survive through-out the weekend.

Whenever I spoke he smiled or grinned and nodded in agreement with a smile.

I said: “Eric was doing really well, he was opening his eyes, his pressures were great, until you guys blew up the balloon in his head, then it was like you dumped a cup of water in a computer and you shorted everything out.”

Again, he smiled, nodded, and said, “Yes.”

I had to stay composed. He had Eric’s life in his hands.

We made an agreement to keep Eric on full code until Monday…yesterday.

I called and spoke to Eric’s nurse yesterday. They didn’t want a meeting until today. Her words were “ he has one reflex, breathing.”

Okay, again, in a coma, breathing above the vent, not brain dead as promised by the leading man in Michigan?

“You have to start thinking about comfort care.”

Now, I already know by someone that works in trauma at Henry Ford, that there are children waiting on Eric’s organs. Organ transplant brings in hundreds of thousands, while Eric only costs them money.

I asked her exactly what it was to do comfort care. I guess this was her way of talking about euthanizing nicely.

“Well, we take him off the vent and we administer morphine to lower his breathing. The more he tries to breathe, the more morphine we administer until he goes into cardiac arrest.”

“So you overdose him.”

Mary, the nurse, became upset at my terminology. I didn’t care.

“No, it’s dying with dignity.”

Dignity for whom? Eric was anti-drug, to him overdose till heart attack isn’t dignity.

But she assured me they would have the teams set in place to immediately remove his organs.

Today I meet with the doctors at three.
 
Please help if you can...
Thank you,
Pam
 
 

Friday, May 23, 2014

I Love You, Eric


Dear Eric,

          Oh how I know this would embarrass you, but please understand that it’s all I have. I just learned there is no way, no matter what, that you can come back. Your heart is still beating, the same heart I once heard come to life on a fetal monitor before you were born. You are still breathing over the ventilator. Your body doesn’t want to quit and I know you don’t want to leave us because you are afraid and worried for all of us. Eric, this hurts like nothing ever before, I don’t even know how to let you go, but I do know that every twinge of pain, every tear that falls, is mine, and I don’t regret a single minute of being your mom.

          Eric, my fear is you are locked in your body, alone and afraid, trying to scream out to us, but deep inside I know you have said: “Kick rocks, I’m outta this Bitch, Peace.” It’s okay. I don’t want you to stay in a lifeless body. My God, I don’t want to lose you, and selfishly a part of me wants to keep you alive at all costs, but that isn’t what you ever wanted.

          You’re laughter, your silliness, your loyalty, and your love will live on forever through all of us. I know you know you were loved by every one of us and we know how deeply you loved everyone, be it one of us, or one of your friends. If you liked, you loved, if you loved, they were family, no matter what. You will never be forgotten or left behind, Eric, I promise.

          We never talked about death, why would we, you were so young, healthy, and full of life, there wasn’t a reason, so I’m wingin it, Eric. I don’t know what to do or how you would want it to be done. All I can do is follow my heart and believe I am making the right decisions for you.

          Oh my dear third born child, my second son, my only blue eyed boy, I can’t let you leave this world in vain. I can’t “put you to rest” because you aren’t old and withered from life. You are young and vibrant, a warrior, and because of that I can’t allow your perfectly healthy body to leave without saving the lives of others that have a chance to live long and healthy, through you. I hope you are down with that.

          I will never tell you goodbye. I can’t. I won’t. I don’t want to. I know you will always be with us, no matter what. I love you, Eric….I love you….and you know with everything in your soul…that if I could have done this one for you, I would have.

          I want you to know; that no matter what it takes, you will have a service of honor….and to those of you that know Eric….you’ll understand these words: You will not go out of this world as a bum. If I have to sell my car…I will…I promise.

          I love you, Eric….and thank you for giving me the honor of being your mom.

          Don’t be afraid….I love you…forever and always…Mom